Doing Autism Differently
ensuring her journey is different from mine
Yesterday morning was busier than usual.
J, my eldest, was selected to represent her school in the district’s Science Olympics and she needed to be in early to catch her ride to the venue. By the time I’d come back then dropped the other two off half an hour later, there was just time to clear away the breakfast things, put some coffee on, and pull out the big white folder that holds all the paperwork relating to our 4-y-o’s autism diagnosis.
K and I were expecting a home visit from Lisa, a consultant at Resources For Exceptional Children, to discuss the various forms of support available to help S develop and thrive both at home and at school – in fact, in all areas of her life. This regionally and provincially funded service, supplying support and advice, advocacy, case management, strategy development, family networking and links/introductions to other community agencies, is available until S is 12 and will help us to minimize gaps between her and her neurotypical peers.
Over the course of ninety minutes, after signing the necessary consent and privacy forms, Lisa outlined what the agency could do for us, describing the on-site resources (multi-sensory room, resource library, etc.), enhanced staffing and recreational programs to facilitate inclusion of children with varying needs, and most importantly to us, the help they could provide in navigating and coordinating the numerous other agencies involved in autism support.
S’s diagnosis a year ago at three plunged us straight into the deep end of special needs management. Our understanding of Autism Spectrum Disorder (ASD) was limited to clinical descriptions and bullet points gleaned from books and websites; it did little to prepare us for how it translated on an individual level.
Provision for autism and other special needs support in Ontario is delivered through a number of different service providers and service options. Though plans are afoot to combine them all under one framework at present they’re a clunky (and confusing) collection of acronyms and arbitrary names.
Following the diagnosis we were bombarded with pamphlets and telephone numbers of agencies to register with but, with S being so young, were clueless about exactly what kind of help we needed. I got us onto waiting lists and hoped things would become clearer with time. Not so much a learning curve, more a motorcycle Wall of Death! The only thing keeping us from total chaos was forward momentum, with only a vague idea of what we were racing towards.
Over the past year I’ve got better at recognizing S’s difficulty ‘filtering out’ extraneous sensory stimulation, whether it’s noise from her surroundings or visual stimuli that takes her focus away from a task. I’ve learnt about her sensitivity – her gift for empathy and ability to ‘connect’ on an emotional level with peers and adults, and conversely, her difficulty coping with increased emotional responses like a stern telling off or an excess of excitement.
“I am different, not less”
I see beyond her natural ‘youngest child’ desire to keep up with her older siblings to her insatiable hunger for learning and intense curiosity in the world around her, and as I get better at identifying her needs I find she’s teaching me a lot about myself. I want to nurture her strengths and teach her to manage her challenges without feeling discouraged or diminished, I want her to grasp that she’s different, yes, but not less because of it.
The other side of the coin
I feel this viscerally because S’s diagnosis with ASD led me to my own, at thirty-seven years old. It was the cipher that solved thirty years of frustration and self-loathing at my struggles to meet commonplace societal (and parental) expectations. This invisible, undiagnosed condition influenced my ability to maintain friendships, manage emotions, hold a job, forge a career, and most of all, to like and value myself.
When I look back on my life before I married and started a family, it’s with an acute sense of failure. I went from an A grade student offered a bursary, to a university dropout sleeping on sofa’s. The intelligence that promised my pick of careers couldn’t make up for my unaddressed difficulties in functionality. I watched success slide through my fingers. Clawing desperately at the brighter future I’d been promised I applied to join the Royal Air Force, only to be declared medically unfit for work. Then things really fell apart.
Depressed, isolated and alone, undergoing treatment that remained stubbornly ineffective, I turned to self-medication and self-harm and came close to self-destruction. It was a hard, humbling road back to something resembling normality, and though my past has given me a depth and insight unavailable to many, I’d be lying if I said I never feel a sense of grief for how things might have been.
And so it was with a lump in my throat and dangerously moistening eyes that I described my beautiful, clever, mischievous daughter to Lisa and discussed all the ways we could help make her future the antithesis of my past. Inside I wept for the girl who had to go it alone, but thanks to her, S will never know how that feels.